Tag Archives: my stroke

Again crazy week with the even crazier weekend.

I think that I should be prepared for unexpected by now and in a way I am but from time to time I have small pinches of the feeling which I like: yaaay, my life isn’t as boring as I usually think!

anyways. on Tuesday my fellow strokie, Louis Gustin, invited me to a conference(meeting, whatever you should call it) to Warsaw. As a proper yes-woman, I agreed immediately, not even thinking about it. I thought that it would be pretty cool to meet Louis and even cooler to find out more about

life after stroke.

I was telling people that I had been a participant in the conference of sick people in Dubai, but it wasn’t the conference of sick people in Dubai. It was the NCD Alliance Global Forum 2017 which means it was a forum of professors, NGOs, politicians, people advocating for patients and sick people themselves.

I came back. Now I’m able to tell you how it went;) Of course, I have plenty of thoughts on a subject of the conference – NCD Alliance Global Forum 2017, but I have the feeling that my readers are equally interested in the basics. how did I handle the trip? Was I very tired? Did I skip classes?;) What did I see in Dubai?;)

Warning: it’s gonna e a long entry, so I divided it into few parts so that people having difficulties in reading could read it part by part.

Trips

Plenty of you was asking me about flights and journey itself. Of course, I had to fly to UAE. Two flights each way. I didn’t experience any problems connected to flying. I mean none. Nothing hurt, even my ears weren’t hurting me during landing. After coming to the hotel I got a headache, but I bet the reason was exhaustion, not change of height:)

I know that plenty of people who suffered the brain stroke has huge problems with flying. I feel much better in a car than on a plane. In this case, it was the same. Sorry mom, the drive you gave me to the airport was much worse than the flight itself. Taxis, cars, buses were my nightmare. No exception in UAE. Sorry about that. Continue reading

Today I have my third rebirthday.

on 21st Dec 3 years ago I had a brain stroke. That means that I’m at the same time 28-year-old, 63-year-old and 3 years old.

Each year I feel very weird on this day. I really feel that this date is important to me, even more than my birthday. celebrating the day you were born, its something natural, but I didn’t choose the way of my growth, right? My mom says that I didn’t say ‚no’ to food, but it’s not like I was choosing it. After my brain stroke, I conducted my life consciously to the point that I could. From the diaper to the place I’m in.

Last year was a bit peculiar to me. It cant be related in few words, so I’ll leave it until the new years eve;)

Today I’m gonna be traditional. I’m gonna tell you the ways my life changed in a good way. Areas that are better now.

As you know, the life of a strokie isn’t that great. Frequently it seems to be hopeless and horrible. But there can be found things that changed for better. I truly believe that each and every one of us can find at least one such thing, even if his or her life is miserable.

Well, I have to admit, that few things changed for worse last year. surprisingly I feel weaker than last before. Strange. This year I haven’t had a stroke, the year before I did. how to explain that?:o

so many things are going for worse, I’m not gonna focus on them because there are plenty which changed my life for better. Since last year I’ve noticed a big growth. I’m letting the list expand, even if it grows that big, that it’s too long to read.

so.

what has changed in my life for better after stroke?

I take better care of myself,

I’ve met few new, nice people,

I’ve let go few people, who were bringing me pain. emotionally it’s a great thing for me,

I’m less stressed with small things,

I don’t have a stressful and horrible job anymore,

I’ve learned knitting,

I quit smoking,

sometimes I’m rested,

the card ‚you know, I’ve had a stroke’ still works for me,

I know why I’m oversensitive to sun,

I have a PFO fixed,

I’ve I’ve found a new, great psychologist and i feel that she’s the one,

I’ve learned Spanish. I can communicate in this language. And I learned it by myself,

I’ve lost 15 kilos,

I don’t have to give my granny rides to shops. Not being able to drive sucks, but on the other hand, I love this excuse,

I see that I’m helping people,

My hair fall out less,

i’m thinking about myself more,

I started dating,

I have a small collection of figures of goats,

I understand people better,

I’m not that worried about money. I know its very horrible, as my parents are providing for me, but on the other hand, before I was counting each zloty with a fear, and now I’m still counting, but without fear,

I get long depressive states less frequently,

I get rid of stuff rather than I collect them,

I’m learning to have an order around myself,

If its even possible, I’m closer to my brother than anytime before,

again I appreciate being outside,

I have the hammock!

I can do things in WordPress better and better,

I have ‚my own’ business. It goes badly, but it’ll be better. one day.

I have a feeling that I’m more active.

Comparing to the Polish version this list is shorter for two points;)

But still it’s impressive, isn’t it?

I like the points about being proud of myself, as for the first time I really feel pride and satisfaction. It’s a new, great feeling to think about yourself well. For a change;)

Maybe you should try to think about such list yourself? Even in despair, we can find something. For me, the first thing was realising in a hospital that I have nicer skin.

This is the translation of my polish text with some small amendments. Keep in mind that I wrote this text on a first day of the conference, after a whole day spent in planes, now it’s a week later.

My question is: do you even know what NCD is? Well, until I was invited to this conference, I had no clue what this term means.

NCD is an acronym for non-communicable disease. What is it? It’s an illness which you can’t catch someone or something. So stroke, lupus and depression fit the term, but AIDS, plague and flu don’t.

Actually, even Wikipedia doesn’t say ow wide this term is – it can be used only to chronic diseases, but it doesn’t have to;) But, for the sake of this blog let’sBut basically, that’s it. (by the way in polish we have term ‚choroby niezakaźne’. But it’s rather used only because we use term ‚communicable or infectious diseases’. ‚non-communicable ‚ is just waaaaaaaaaaaaaaaaaaaaaaaaaaaay to wide. But who I am to judge all of it;)

Let me go back to the main translation ( text from Dec 9th)

As you can suspect being a part of NCD Alliance Forum 2017 is, on one side an honour, on the other adventure, both for personal and ‚professional’ (stroke survivor’s;) causes. My blogs are the most precious thing for me, therefore being recognised for them is rewarding. Continue reading

Two days ago I had my first rebirthday of my second stroke. Lil’ stroke – it was waaaay smaller than the first one. Lil’ stroke – it hasn’t destroyed every single thing, only slowed down the process of healing, and added some inconveniences.

The stroke that didn’t change my life completely, but showed me, that my life isn’t normal. But who cares: I will work out everything. At least I hope so:)

In some ways, this stroke changed every single thing, in others – nothing. For example, I have like 99% of certitude of the cause of my strokes. I’m not scared and I don’t feel anxiety caused by Uknown.

But I didn’t mean to write about it. I want to express my feeling about living with this shit. I will focus on emotions, which have been a wreck for past few weeks. Or months?

Don’t get me wrong, I’m not unhappy. Ironically, I have a feeling that my depression problems got smaller after my strokes. This year I’ve had few pretty well months! Despite that, my emotions have been shaky. Like a swing, the hugest swing in my life. Minor things drive me crazy, mad, sad, or happy, ecstatic, loving… If you know what I mean. Continue reading

What were you doing when your brain stroke happened? I, myself, didn’t think about it much, but people keep asking me. And suddenly… I saw one topic on the Internet forum where strokies were sharing this information. I collected more, reminded myself stories from hospitals, and my readers. List surprised even me. It was diversified. And long. Now I am able to present thrilling collection which seems to scream „come on, it can happen anytime. Anywhere. To everyone”

Of course I’m very proud but it’s not only about it. I wanted to say that wasn’t easy. Even process of writing itself was very tough and I even stopped rehabilitation (seriously!), I have constant headache and I’m stressed out of millions of reasons. Maybe my work is not unassisted enough, as my friend (the best editor ever) edited my text (she says that not much, but still..). Maybe the text is not good enough. Maybe I will not send next text on time. Maybe they will thank me for my help and I will lose internship. Maybe, maybe, maybe…

It’s just internship, they are not too demanding. But still I’m full of fear and doubts. But let’s go further.

I sent CV to the Foundation just before second stroke. When they contacted me lately I had millions of doubts. But I wrote the text, noone read it, I was accepted without any help. it wasn’t easy for me, but I did it! But you know I’ve been working for it since 9th of May 2015, when I published my first note on m Polish stroke blog, www.lewaczka.pl.

I write daily. I write here, on my Polish site, I write private things just to exercise. I’ve never been so hard-working in my job I have to admit:) But it’s like 1,5 year or daily rehabilitation. It didn’t come over a day. And I wouldn’t be so determined if I didn’t know about my readers. When I get messages like this I’m over the moon.

meaning: thanks for another motivation for me. I’ve had my elliptical trainer for 2 years, but now I’m feeling bored with it. But from now on I’m starting training again:)

Because I see it’s sensible. And after messages like his

meaning: I wish you quick return to your home

it’s so moving for me that my eyes sometimes get wet. I can’t help it.

And when you share your stories or ask for help, i feel more than honored. And you know what – without your support, without support of my family and friends, this article wouldn’t have happened.

But ok – let’s add something bitter to this sweetness;) I’m fully aware that many people after strokes will not regain full functionality. I’m somehow convinced that even me myself will not recover fully. I might look well, but this ‚might’ thing is nothing in comparison the ‚healthy’ i remember.

Some of us may struggle or regaining something really basic, I don’t know, like speaking or well balance while getting up. And I’m feeling guilty sometimes for talking so much about working out and faith while I stood up and moved my arms so quickly. But I see that good expectations management can bring plenty of good things to our lives. I always joke about my future literary Nobel prize, but I don’t expect it. It’s nice to dream though. It’s important to manage your goals and expectations well and always dream about bit better. The way is long and hard, and made of thousands of small steps. We go further with these baby steps, and feel this is slow. But when you look back on all the steps you’ve taken you see that road was super long. And the end is not even in sight. And when I think what I’ve achieved, it’s like a huge thing. Not only the article. Also being able to sit without any help. Walking by myself.

After second stroke (shame on it!) I feel rather depressed and full of doubts, but it’s temporary thing, not to be expressed loudly, cause I know that I’m not in a position to complain. In general there is some hope for me. And for all of us:)

Yeah. Now I’m sending all of you (all of us?) plenty of warm thoughts for a World Stroke Day. I wish all good, strokeless life, And if stroke is already here, I wish you no repetition:) And with these words I finish this exalted text and I’m going to Spanish conversation.

But when I saw that it’s available I was scared to watch it. I expected it could be a hard experience for me, stroke survivor myself, who finds it hard to discover beauty in her brand new brain.

Curiosity won. I watched it. With a cafe break in the middle because it was too emotional for me. Not because of the story, I knew what to expect after a stroke. Because of detailed insight of someone else’s stroke and all the emotions behind it. If you know, what I mean.

First time in my life I saw material that gave so close insight to the world of a stroke survivor. And it doesn’t matter that details of my experience were much different from Lotje’s. Principles stayed just the same.

If I’m faced to the question, „who am I?”, I’m someone who has huge amount of friends, very hard-working, travels all over the world, loves to read. What if all that evidence is removed? What does that make me?

says Lotje, 34-years old stroke survivor. It might seem even too philosophical, but actually most of stroke survivors have to deal with this question. And find their way of answering it. Movie is full of such questions and shows a way of finding answers. Even if it’s not always explicit.

For me one of the most important aspects of movie was filmmaking itself. I have a deep feeling that recording everything was not only a way to remember things for Lotje. It was helping her to understand what’s going on and put this brand new experience into an understandable structure. To tell the truth, my blog (first, Polish version) did the same thing for me. I was starting it with different goals, the more conscious way of experiencing myself came as a bonus. Which now is one of the most important things in my life.

All of it – story, the heroin, visuals, montage, edition looks brilliant and makes a great documentary. Really good one, modern and touching. I could easily imagine it nominated to Oscar prize, not only because it is „my” theme.